I believe that I still have all my marbles. But just in case I don't, I'm continuing the journaling on the last day of September. I haven't counted the days since I dropped off the radar but it still seems pretty surreal.
The weather is lovely, the trees are starting to turn and Mom & Dad's house has many windows looking out on a wooded lot. In addition a thoughtful friend deposited a large bouquet of roses on the back deck that I can enjoy in the changing sunlight through the day.
The lot is full of walnut trees and they drop constantly. A thud on the deck, a surprising thud when you back over one in the driveway. I mention this because it is a daily ritual for Dad to gather walnuts. and in a like father-like son episode on the weekend, Walt complained that he cleared all the walnuts Satuday morning and there were now 70 laying on the deck. He used that specific number...I have not decided whether he actually counted them.
I feel pretty good, not so foggy as I felt on the weekend. The basket of pills does not look so overwhelming...some days it really looks like an egg basket, some of them are so big.
The clinic visit today was uneventful except for seeing Dr.Ganguly practically exuberant over the chest scan from yesterday. He is generally low key and business-like, but today he was downright excited and clearly much less worried about difficulties with my recovery from this phase of treatment. My WBC count was 1.3 this morning, which is surprisingly low to me. He said it could go to zero, but not likely. And of course, the whole point of this mini-transplant protocol was to avoid going to zero, thus avoiding a recurrence of the lung disease. The platelets are dropping daily, but the Hemoglobin is still high (for me) around 9. It is the last to drop. They estimate I will be needing transfusions again next week.
Mom is going to bridge and Unit tomorrow. I'm excited. She has not attended her routine social gatherings since I came to stay and I think it takes a bigger toll on her than the constant cleaning and monitoring that is required to ensure a safe environment for me. Janice is here for the month of October. She has taken a leave from her job as a special ed teacher in Ft. Scott, KS to be here through the grafting process. I bought a book "All about Scrabble" in order to better defend myself against her. Unfortunately, she found it right off and even pointed out some things to me that I had overlooked. sigh. Lucky I have chemo-brain to blame. (The book is out of date because it doesn't have the 2 letter word "QI" which is a lifesaver. sigh)
Walt is feeling pretty good. He still has the occasional headache. He moved into the Marriott yesterday for the John Deere annual meeting. So we won't see him again until Friday.
Janice ordered a t-shirt for me today that says "Blame it on the Y chromosome" Since I received stem cells from my brother, my blood will be boy blood. I will have XY chromosomes instead of XX. The transplant team likes this because it's easy to tell how things are working by how many XX vs. XY cells there are. But I plan to take full advantge of this new excuse when I lose at Scrabble or Gin.
So many thanks to my caregivers. all of them. Mom and Dad. Mari and Janice. Conor and Walt and Mark. Lori. Trish and Rhonda. Nieces and nephews. Everyone has chipped in. Thanks to everyone for the cards and letters and email. Some send me jokes, some send me pictures and some send little tokens. I treasure them all. My scout friends have been there in spades. My book club friends, girls on tour, work friends. Even the liberals and conservatives all seem to be on the same page. I feel like it's a huge team working on my behalf and I am just coasting along atop all the good wishes.
Thank you everyone.
Cathi
Tuesday, September 30, 2008
Monday, September 29, 2008
Will I remember this?
From Mom with slight edits from Conor...
I'm writing this afternoon because nurse Mary told me today that I would probably not remember things right now and for the next week or two. This will be my journal...I may not want to read it, but it will be there. I carefully wrote down everything anyone said today, and so did Walt who went with me.
Nurse Mary is Mary Ferguson Dinges. In the early days of clinic visits, we discovered that her father worked at Black & Veatch and in fact carpooled with my father. Her father died a long time ago, of cancer, and she grew up to be an oncology nurse. I would like her without this connection, but the connection, however slim, makes her special.
I saw Dr. McGuirk today. I like him a lot...along with the other guys in this program. Walt took little bottles of Cold River Vodka to the clinic for nurse practitioner Abby and nurse Jenny who did his biopsy way back when. Cold River is made in Maine and is proclaimed by Bon Apetit magazine to be the best vodka for mixing drinks. Abby is THE most painless administrator of a bone marrow biopsy ever.
* Conor Note: The first time Mom saw McGuirk, some time ago (but after she was out of the hospital), he confidently recited everything that's happened to her. He clearly manages this program with a detailed eye - refreshing to have that level of care.*
CT scan of my lungs revealed much healing since the last scan 19 days ago. So no new antibiotics yet. They stressed that this is the valley when all the counts go down and we must call about every little change. Every ache, pain, nausea, fever, etc that is a change. Of course hot flashes do not count. Just gotta deal with those. They come with the territory. I wouldn't mind them so much if they didn't wake me up frequently in the night.
I received 2 units of magnesium today. Magnesium is important to keep the electrical points firing correctly. I also got the "Protein Queen" award because my protein count was so high. I guess sucking all that stuff down pays off. As my appetite wanes, I wish for a protein drip they could just give me.
So, I think that the social worker would think my report is rambling. And I recognize that. But like the hot flashes, it will just have to be. Comes with the territory.
I'm writing this afternoon because nurse Mary told me today that I would probably not remember things right now and for the next week or two. This will be my journal...I may not want to read it, but it will be there. I carefully wrote down everything anyone said today, and so did Walt who went with me.
Nurse Mary is Mary Ferguson Dinges. In the early days of clinic visits, we discovered that her father worked at Black & Veatch and in fact carpooled with my father. Her father died a long time ago, of cancer, and she grew up to be an oncology nurse. I would like her without this connection, but the connection, however slim, makes her special.
I saw Dr. McGuirk today. I like him a lot...along with the other guys in this program. Walt took little bottles of Cold River Vodka to the clinic for nurse practitioner Abby and nurse Jenny who did his biopsy way back when. Cold River is made in Maine and is proclaimed by Bon Apetit magazine to be the best vodka for mixing drinks. Abby is THE most painless administrator of a bone marrow biopsy ever.
* Conor Note: The first time Mom saw McGuirk, some time ago (but after she was out of the hospital), he confidently recited everything that's happened to her. He clearly manages this program with a detailed eye - refreshing to have that level of care.*
CT scan of my lungs revealed much healing since the last scan 19 days ago. So no new antibiotics yet. They stressed that this is the valley when all the counts go down and we must call about every little change. Every ache, pain, nausea, fever, etc that is a change. Of course hot flashes do not count. Just gotta deal with those. They come with the territory. I wouldn't mind them so much if they didn't wake me up frequently in the night.
I received 2 units of magnesium today. Magnesium is important to keep the electrical points firing correctly. I also got the "Protein Queen" award because my protein count was so high. I guess sucking all that stuff down pays off. As my appetite wanes, I wish for a protein drip they could just give me.
So, I think that the social worker would think my report is rambling. And I recognize that. But like the hot flashes, it will just have to be. Comes with the territory.
Sunday, September 28, 2008
100 grams of protein a day. ugh
Cathi posting tonight.
My appetite is diminishing, food doesn't taste so great and it's getting dang hard to choke down 100 g of protein a day. I was gaining about a pound a day from all the food, but loss of appetite, loss of weight. I'm still getting close to the 100 g. But I wish protein powder tasted like coca-cola and that gatorade had protein. (Gatorade is my drink of choice for some of the big honkin pills on the menu)
They seem to find something to do to me every day at the clinic. Today my blood pressure was lower, more like what used to be normal for me, but it was too low for them, so fluids. I do not think it is possible to drink enough fluids to avoid one of those IV bags.
The nurses tell me it will get worse before it gets better. I guess that's why I'm posting tonight, because I might not feel good enough to write tomorrow and the next day. Fortunately the anti-nausea drugs are working this time so all the protein I've managed to choke down has stayed down.
Conor was here for a few days and I got so used to having Sports Center on the TV that it felt funny sitting in the clinic this morning without it. He is a great attendant and I appreciate all his efforts. But he is one sports fanatic. Speaking of sports, how bout them Chiefs? I actually enjoyed watching the game today. I'm grateful to Conor for coming and to his wife Annie for fending for herself while he is here. I reckon the next time we see each other, they will be parents.
Walt is feeling better every day. His joints were really achy after taking the neupogen shots to blow the stem cells out into his blood. He is staying at my house, looking after the dogs and attempting to restore order to the place. (Have I reported that according to my dad my "whole life is in plastic bags in the garage?") Walt went to the game today and will be staying through this week. Hopefully he enjoyed the Chiefs' win as much as the Star Wars movies.
So uneventful continues. I do not know exactly what the BMT folks expect but right now the White Blood Cells and the Platelets are decreasing every day while the hemoglobin has stayed pretty even. Nobody raises an eyebrow so I guess this is good. I'll keep you posted.
My appetite is diminishing, food doesn't taste so great and it's getting dang hard to choke down 100 g of protein a day. I was gaining about a pound a day from all the food, but loss of appetite, loss of weight. I'm still getting close to the 100 g. But I wish protein powder tasted like coca-cola and that gatorade had protein. (Gatorade is my drink of choice for some of the big honkin pills on the menu)
They seem to find something to do to me every day at the clinic. Today my blood pressure was lower, more like what used to be normal for me, but it was too low for them, so fluids. I do not think it is possible to drink enough fluids to avoid one of those IV bags.
The nurses tell me it will get worse before it gets better. I guess that's why I'm posting tonight, because I might not feel good enough to write tomorrow and the next day. Fortunately the anti-nausea drugs are working this time so all the protein I've managed to choke down has stayed down.
Conor was here for a few days and I got so used to having Sports Center on the TV that it felt funny sitting in the clinic this morning without it. He is a great attendant and I appreciate all his efforts. But he is one sports fanatic. Speaking of sports, how bout them Chiefs? I actually enjoyed watching the game today. I'm grateful to Conor for coming and to his wife Annie for fending for herself while he is here. I reckon the next time we see each other, they will be parents.
Walt is feeling better every day. His joints were really achy after taking the neupogen shots to blow the stem cells out into his blood. He is staying at my house, looking after the dogs and attempting to restore order to the place. (Have I reported that according to my dad my "whole life is in plastic bags in the garage?") Walt went to the game today and will be staying through this week. Hopefully he enjoyed the Chiefs' win as much as the Star Wars movies.
So uneventful continues. I do not know exactly what the BMT folks expect but right now the White Blood Cells and the Platelets are decreasing every day while the hemoglobin has stayed pretty even. Nobody raises an eyebrow so I guess this is good. I'll keep you posted.
Friday, September 26, 2008
Day 2: Uneventful Day at the Clinic
I'm going to run out of adjectives for the days if they keep up at this pace, and I think we're all ok with that. As such, I'll keep it short. But I'd be naive if I thought they'd all be like this. One can always hope and pray!
We arrived, they drew blood. During the conversation, Mom shared that she's not staying asleep very well. Falling asleep is not a problem (thanks to Ambien), but staying asleep is. So we've souped up the Ambien to Ambien CR. It's more of a controlled-release prescription to keep her asleep. I'm happy to report she's sleeping well right now.
I probably misspoke a bit b/c Mom's face was a little flush, which sure got a reaction. Clearly if anything is visibly evident (that could be construed as graph vs. host I assume) they will roll everyone out for it. Ganguly came in to look, and asked if Mom had been in the sun. Well Mom is following strictly the guidelines of isolation. The only 'outside' time she had yesterday was to / from the car and sitting in the Target parking lot while I ran inside.
Ganguly said she'll need sunscreen every time she's outside as her skin is very sensitive right now. But he decided her appearance was a combination of the pre-radation drugs and the radiation treatment. Mom got a good laugh out of all the attention just a little change in color will bring.
The only thing they found in her bloodwork was she needed additional fluids. Well I should say it wasn't even from the bloodwork. Another quick evaluation they do is 3 sets of blood pressure and pulse readings. Maybe this is something we can all take to measure our hydration b/c I certainly had no clue. :) They have her lie down for 30 - 60 seconds, then take a measurement. That baseline is then compared to the blood pressure / pulse while sitting then standing. The idea is to have them all the same. And there was a very slight change when she stood up.
So that sent us for a fluid IV. I asked Mom this evening if she'd had enough to drink today so we can avoid that. She said if she has the same thing happen tomorrow then she's giving up water altogether b/c she had so much today. Too funny.
I guess there was more today than I initially thought, but still minute in the grand scheme of things. We'll hope for more of the same tomorrow!
We arrived, they drew blood. During the conversation, Mom shared that she's not staying asleep very well. Falling asleep is not a problem (thanks to Ambien), but staying asleep is. So we've souped up the Ambien to Ambien CR. It's more of a controlled-release prescription to keep her asleep. I'm happy to report she's sleeping well right now.
I probably misspoke a bit b/c Mom's face was a little flush, which sure got a reaction. Clearly if anything is visibly evident (that could be construed as graph vs. host I assume) they will roll everyone out for it. Ganguly came in to look, and asked if Mom had been in the sun. Well Mom is following strictly the guidelines of isolation. The only 'outside' time she had yesterday was to / from the car and sitting in the Target parking lot while I ran inside.
Ganguly said she'll need sunscreen every time she's outside as her skin is very sensitive right now. But he decided her appearance was a combination of the pre-radation drugs and the radiation treatment. Mom got a good laugh out of all the attention just a little change in color will bring.
The only thing they found in her bloodwork was she needed additional fluids. Well I should say it wasn't even from the bloodwork. Another quick evaluation they do is 3 sets of blood pressure and pulse readings. Maybe this is something we can all take to measure our hydration b/c I certainly had no clue. :) They have her lie down for 30 - 60 seconds, then take a measurement. That baseline is then compared to the blood pressure / pulse while sitting then standing. The idea is to have them all the same. And there was a very slight change when she stood up.
So that sent us for a fluid IV. I asked Mom this evening if she'd had enough to drink today so we can avoid that. She said if she has the same thing happen tomorrow then she's giving up water altogether b/c she had so much today. Too funny.
I guess there was more today than I initially thought, but still minute in the grand scheme of things. We'll hope for more of the same tomorrow!
Thursday, September 25, 2008
Day 1: First Clinic Visit Post-Transplant
The first clinic visit post-transplant gave us a good feel for what the process will be going forward. If I had to summarize, it's evaluate and modify.
We arrived, and the first step was to draw blood for testing. Then a nurse and nurse practitioner came in to ask questions while we awaited results. They're essentially monitoring two things: blood counts and drug progress. Those are indicators of how the marrow is taking hold.
They talked about something interesting today that I don't think we've posted on the blog. It's actually preferred to have a little bit of 'Graph vs. Host'. That would mean Mom's body fighting with Walt's. I guess it's the same as some people's view of a healthy relationship - need a little bit of disagreement to be healthy. :) We'll update that as we get medical word. That probably won't be until closer to 12 - 15 days. But certainly something everyone can 'cheer for'.
So the results showed she was a little low on Magnesium. They hung 2 bags for a total of about an hour. Then we were done.
For now they did not show any drug modifications so dosages will continue as they have.
That's it. Evaluate and Modify. Good night.
We arrived, and the first step was to draw blood for testing. Then a nurse and nurse practitioner came in to ask questions while we awaited results. They're essentially monitoring two things: blood counts and drug progress. Those are indicators of how the marrow is taking hold.
They talked about something interesting today that I don't think we've posted on the blog. It's actually preferred to have a little bit of 'Graph vs. Host'. That would mean Mom's body fighting with Walt's. I guess it's the same as some people's view of a healthy relationship - need a little bit of disagreement to be healthy. :) We'll update that as we get medical word. That probably won't be until closer to 12 - 15 days. But certainly something everyone can 'cheer for'.
So the results showed she was a little low on Magnesium. They hung 2 bags for a total of about an hour. Then we were done.
For now they did not show any drug modifications so dosages will continue as they have.
That's it. Evaluate and Modify. Good night.
Wednesday, September 24, 2008
Transplant Day
I am happy to report the transplant was successful. And the day was uneventful as we hoped. Mom said as she left the house, 'I have work to do.' Couldn't have put it any better!
We arrived at the Radiation Oncology clinic about 11:30 this morning. In preparation for the radiation, Debbie (with a slight British accent) told Mom she could just 'pop' into her pajama pants she'd brought. Mom responded that they were K-State pants. Debbie said, 'well just this once.' We all laughed yet I reckon it's good we only needed radiation once. :)
Mom was the only one that went into the room. But she said it's very dull. Most everything was plywood including the chair she was sitting in. They treated both sides using a sheet of plexiglass with plywood on either end of it for about 20 - 25 minutes. She had some tape on various parts of her body with red lines on them so Debbie could line up the proper places to radiate.
After mom was all radiated up, we went over to the Med Center where they were harvesting Walt (interpret that however you'd like). He sat through 5.5 hours of 2.5 Star Wars episodes. The woman next to him asked what channel it was on as he was leaving b/c she wanted to watch! But he did give plenty for the transplant and they actually froze enough for another. That was one step complete. There's always a potential that enough won't be harvested resulting in another round of Neupogen, etc...and of course delaying the transplant.
Room 4216 was the room for the day. Really the whole process was pretty interesting if you think about the fact they're literally changing her DNA. One bag, one hour, and you would have thought it was someone just getting blood other than the slightly different color (more of a yellowish red). The nurse came in with the cells and a message from Walt:
'5 hours of Star Wars and we have it figured out:- The little guys win and no one likes the bad guys.
- Sara (Walt's cousin) and I send our love and my strength.
- Here are 438 mLs of little guys'
Here's a better pic of the transplant going on for those wondering what the actual harvest looks like.
So we're back home after 4 hours of observation (departing at 8:30 PM), and will return to the clinic at 7:30 AM tomorrow for the first of many follow-up appointments. The further we get from the transplant, the more spread out they'll get. But I'll attempt to post daily for the next 5 days or so with a recap of each visit.
Mom's work is complete for today with many steps to go. But I think we can all agree she'll sleep well tonight having this done.
Tuesday, September 23, 2008
Pre-Transplant Day
Conor reporting...
Not a ton to report today other than general relaxation and resting after a quick clinic run this morning. Tomorrow's the big day so of course there'd be rest today! We are working on head phones that will function with Mom's hearing aids though so if anyone has any suggestions - bring 'em.
Walt goes in at 7:30 AM to begin his prep work for the harvesting. His last neupogen shot was today. Word is he'll be watching 'Star Wars' all day. No word on whether he'll think storm trooper when he hears WBC. :)
Mom arrives at 11:30 AM. First is radiation then transfer to the BMT unit in the afternoon (2ish) for the transplant. The plan is to stay there 4 hours for observation immediately after the transfer. We do have our clinic schedule for the next few days, but as with the early days back home - each day will be like a box of chocolates...you never know what you're gonna get. The hope is nothing unexpected though.
Like I said, really not much to say. I'll be sure to post a detailed account tomorrow on how everything goes!
Root hard...
Not a ton to report today other than general relaxation and resting after a quick clinic run this morning. Tomorrow's the big day so of course there'd be rest today! We are working on head phones that will function with Mom's hearing aids though so if anyone has any suggestions - bring 'em.
Walt goes in at 7:30 AM to begin his prep work for the harvesting. His last neupogen shot was today. Word is he'll be watching 'Star Wars' all day. No word on whether he'll think storm trooper when he hears WBC. :)
Mom arrives at 11:30 AM. First is radiation then transfer to the BMT unit in the afternoon (2ish) for the transplant. The plan is to stay there 4 hours for observation immediately after the transfer. We do have our clinic schedule for the next few days, but as with the early days back home - each day will be like a box of chocolates...you never know what you're gonna get. The hope is nothing unexpected though.
Like I said, really not much to say. I'll be sure to post a detailed account tomorrow on how everything goes!
Root hard...
Monday, September 22, 2008
Chemo - 3rd and last day
So I've been lucky enough to have Ganguly as the attending physician all 3 days of chemo. He makes me believe I will be fine.
And I've been lucky enough to feel only fatigue and a little dry eyes so far. I started taking one of the immune-suppressant drugs today, and i start antibiotic tomorrow and another immune suppressant Wednesday. I have been managing my meds pretty efficiently but I may need help to keep them all straight for a while.
Another list I'm keeping is protein. Grams of protein per day. So far, no tuna gravy...relax! Protein powder, protein bars, and end the day with a protein shake. so far so good. Lotta meat though.
Today my nurse, Apinya (I like her a lot) asked if they had told me yet I would feel 14 yrs younger after the transplant. I'm looking forward to that! to be sure. It might be the same as having normal hemoglobin for the first time in abou 20 years. I texted the info to walt and He responded that the convertible and jenny had done it for him....he didn't need a transplant.
No plants, no pets. no eating out. no eating food brought in. no guests. "This is a time for talking on the phone." Ganguly says. then smiles. New special mask to wear when I'm "out"....that would be the major excursions in my weeks...to the clinic. It's a different style and I think I can paint something interesting on the flat part facing out. A pig's nose (appropriate) or a mug shot of Walt (probably have to get rid of the red hair though.)
So send emails and I'll keep up the best I can. Suggest movies to watch...funny ones. history. I'm signing up for Netflix and I ordered an ipod itouch. Of course I'll have to have Marshall set it up for me....or one of my nephews. Just kidding.
Checking out to the recliner for the afternoon. Y'all be careful out there now.
Cathi
And I've been lucky enough to feel only fatigue and a little dry eyes so far. I started taking one of the immune-suppressant drugs today, and i start antibiotic tomorrow and another immune suppressant Wednesday. I have been managing my meds pretty efficiently but I may need help to keep them all straight for a while.
Another list I'm keeping is protein. Grams of protein per day. So far, no tuna gravy...relax! Protein powder, protein bars, and end the day with a protein shake. so far so good. Lotta meat though.
Today my nurse, Apinya (I like her a lot) asked if they had told me yet I would feel 14 yrs younger after the transplant. I'm looking forward to that! to be sure. It might be the same as having normal hemoglobin for the first time in abou 20 years. I texted the info to walt and He responded that the convertible and jenny had done it for him....he didn't need a transplant.
No plants, no pets. no eating out. no eating food brought in. no guests. "This is a time for talking on the phone." Ganguly says. then smiles. New special mask to wear when I'm "out"....that would be the major excursions in my weeks...to the clinic. It's a different style and I think I can paint something interesting on the flat part facing out. A pig's nose (appropriate) or a mug shot of Walt (probably have to get rid of the red hair though.)
So send emails and I'll keep up the best I can. Suggest movies to watch...funny ones. history. I'm signing up for Netflix and I ordered an ipod itouch. Of course I'll have to have Marshall set it up for me....or one of my nephews. Just kidding.
Checking out to the recliner for the afternoon. Y'all be careful out there now.
Cathi
Saturday, September 20, 2008
Chemo - Day 1
Hello from Cathi.
This message is pre-chemo. I'm up early drinking coffee and getting my head together. Walt is making blueberry pancakes for the sendoff. (I'm assuming he is going to rise from the couch and do this as promised.)
He will be going to the clinic today for a neupogen shot that blows his stem cells out into his bloodstream. He gets a shot every day until Wednesday. Wednesday he gets an IV line in each arm. The blood comes out of one arm, goes through a machine that harvests the stem cells, and what's left goes back into the other arm. Then the stem cells go right into me.
We had a meeting yesterday to tell us all the possible side effects and I left it feeling very lucky to have a sibling donor. Also very lucky to have such a team of doctors and nurses that I trust completely. They have all assured me I will not have red hair at the end, but I might get his allergies. My sisters are looking forward to having a big brother since I will soon have XY blood.
Conor will be arriving on the 23rd to be here for the transplant and staying a week. Walt will be around until Oct 5th. He is staying at my house where he can work conveniently, and look after the dogs! Mari will be here on the weekends and Janice is taking the month of October as leave from her job. I think I will surprise them all and roll right through with few reactions. But I am looking forward to some macho games of Scrabble with the A[tomic]-brain. (term of affection for Janice)
The biggest challenge right this minute is how to consume 100-110 grams of protein per day...no dairy products. I mixed protein powder in my orange juice yesterday and it was ugly but okay tasting. I'm not sure I want to add it to my pancakes or scrambled eggs however. I'm thinking of persuading Mom to fix an old-time Friday meal we enjoyed growing up Catholic. Waffles with tuna-gravy. yep. delicious. And tuna is just loaded with protein.
This message is pre-chemo. I'm up early drinking coffee and getting my head together. Walt is making blueberry pancakes for the sendoff. (I'm assuming he is going to rise from the couch and do this as promised.)
He will be going to the clinic today for a neupogen shot that blows his stem cells out into his bloodstream. He gets a shot every day until Wednesday. Wednesday he gets an IV line in each arm. The blood comes out of one arm, goes through a machine that harvests the stem cells, and what's left goes back into the other arm. Then the stem cells go right into me.
We had a meeting yesterday to tell us all the possible side effects and I left it feeling very lucky to have a sibling donor. Also very lucky to have such a team of doctors and nurses that I trust completely. They have all assured me I will not have red hair at the end, but I might get his allergies. My sisters are looking forward to having a big brother since I will soon have XY blood.
Conor will be arriving on the 23rd to be here for the transplant and staying a week. Walt will be around until Oct 5th. He is staying at my house where he can work conveniently, and look after the dogs! Mari will be here on the weekends and Janice is taking the month of October as leave from her job. I think I will surprise them all and roll right through with few reactions. But I am looking forward to some macho games of Scrabble with the A[tomic]-brain. (term of affection for Janice)
The biggest challenge right this minute is how to consume 100-110 grams of protein per day...no dairy products. I mixed protein powder in my orange juice yesterday and it was ugly but okay tasting. I'm not sure I want to add it to my pancakes or scrambled eggs however. I'm thinking of persuading Mom to fix an old-time Friday meal we enjoyed growing up Catholic. Waffles with tuna-gravy. yep. delicious. And tuna is just loaded with protein.
Tuesday, September 16, 2008
Day -7: Pre-Transplant Preparation
With the transplant now scheduled for 9.24, today was the second day of pre-transplant ramp up. During this time you'll hear more frequently from me. I'll still try to pace the updates as they're applicable. I would assume once Friday comes we'll have them almost (if not) daily.
Yesterday was a full day of evaluations. There were labs, EKG, physical, mammogram, and 3 evaluations (financial, social, and nutritional). Of course everything started a little later than it was supposed to and the room was cold. But Mom made do, and was in pretty good spirits. Grandma was with her the entire day.
Today brought another bone marrow biopsy, several X-Rays (chest and panorex), and radiation oncology. I'll have to circle back with you bloggers to give you the expected marrow results date. My expectation is we'll have them by Friday though.
That's about it. Walt arrives tonight (in about 45 minutes actually) to start his ramp up. We'll see if he gets any special nurse attention, and report back!
Yesterday was a full day of evaluations. There were labs, EKG, physical, mammogram, and 3 evaluations (financial, social, and nutritional). Of course everything started a little later than it was supposed to and the room was cold. But Mom made do, and was in pretty good spirits. Grandma was with her the entire day.
Today brought another bone marrow biopsy, several X-Rays (chest and panorex), and radiation oncology. I'll have to circle back with you bloggers to give you the expected marrow results date. My expectation is we'll have them by Friday though.
That's about it. Walt arrives tonight (in about 45 minutes actually) to start his ramp up. We'll see if he gets any special nurse attention, and report back!
Wednesday, September 10, 2008
Next Up: Transplant
Well I almost started this entry off with 'I'm baaaack', but felt that was an extremely inappropriate way to title it. So you all get it in the first sentence instead. :)
The reason I'm posting is we had an eventful day today to say the least. I had been contacted by Beth Harvey (the Transplant Coordinator) earlier in the week targeting a conference call for today. I can honestly say I thought there would be an update about the timing of the transplant along with the transplant itself. Then she calls and emails this morning asking if I can chat a little earlier. What I didn't expect was how SOON. As a sidenote, neither did the Financial resource I'm working with who had spoken with Beth earlier today.
I can say that we didn't really mince words. She started off the call with saying that Mom had a clearer CT scan, and the doctors wanted to start a transplant. To say the least, Mom was right in how she expected it to go down. The rest of the call was discussing details as there are many. I'm sure there are more we'll learn about over the next few days. But I'll do my best to relay the information here:
Transplant Type
Instead of the standard transplant, they are going with a reduced intensity transplant or a 'mini-transplant' as Abhyankar calls it. This means instead of intense chemotherapy / in-patient care like the first phase, there will be a slimmed down version. If you remember way back when, Dr. Ganguly had said Mom had chemo at the intensity of 5 last time and they expected a 10 now.
This decision was made in order to mitigate the risk of the fungal pneumonia getting out of control. Rather than taking the WBCs all the way to 0, they will take them way down without zeroing. The expectation is that Walt's stem cells will then 'take over' and squash out Mom's remaining cells.
Transplants of this nature are just as successful as the traditional ones. But they are done via outpatient procedures (more below). The big risk is if something goes awry we are forced to go back to the intense chemo, meaning the ups and downs (hopefully not the ICU this time) of the pneumonia are likely to return. So let's all hope and pray that does not happen.
Process
So how does this all work? They expect to start next week with both Mom and Walt.
Walt will undergo one last physical evaluation that includes an EKG and other tests. Assuming nothing unexpected is found (Beth says that's only happened 1 time and it was someone who had literally never been to the dentist in their life), he will start Neupogen doses to boost his stem cells. Then they extract them for transplant.
Mom will begin treatment one day next week where they will give her the chemo, a few days of treatment, and 1-day of radiation. They say the infusion of stem cells (and therefore the actual transplant) would begin that day.
From there, there are a few drugs which I'll list in a later post that she'll take. And they'll do biopsies and tests until they confirm all that is left is male DNA. Beth was funny. She immediately clarified Mom would still look and act like the 'sweet Cathi we all know.' Needless to say everyone treating Mom has been touched by her amazing attitude and strength.
Between now and then
This weekend will be the 'Light the Night' walk for the Leukemia and Lymphoma Society, family time, and overall mental / physical preparation for the weeks ahead. We are extremely happy and proud Mom once again has cleared a hurdle to get to this point. Now let's all root her through the next phase!
I'm also apologizing in advance for anything I may correct later as my notes are at my office and this was all off the top of my head. :)
The reason I'm posting is we had an eventful day today to say the least. I had been contacted by Beth Harvey (the Transplant Coordinator) earlier in the week targeting a conference call for today. I can honestly say I thought there would be an update about the timing of the transplant along with the transplant itself. Then she calls and emails this morning asking if I can chat a little earlier. What I didn't expect was how SOON. As a sidenote, neither did the Financial resource I'm working with who had spoken with Beth earlier today.
I can say that we didn't really mince words. She started off the call with saying that Mom had a clearer CT scan, and the doctors wanted to start a transplant. To say the least, Mom was right in how she expected it to go down. The rest of the call was discussing details as there are many. I'm sure there are more we'll learn about over the next few days. But I'll do my best to relay the information here:
Transplant Type
Instead of the standard transplant, they are going with a reduced intensity transplant or a 'mini-transplant' as Abhyankar calls it. This means instead of intense chemotherapy / in-patient care like the first phase, there will be a slimmed down version. If you remember way back when, Dr. Ganguly had said Mom had chemo at the intensity of 5 last time and they expected a 10 now.
This decision was made in order to mitigate the risk of the fungal pneumonia getting out of control. Rather than taking the WBCs all the way to 0, they will take them way down without zeroing. The expectation is that Walt's stem cells will then 'take over' and squash out Mom's remaining cells.
Transplants of this nature are just as successful as the traditional ones. But they are done via outpatient procedures (more below). The big risk is if something goes awry we are forced to go back to the intense chemo, meaning the ups and downs (hopefully not the ICU this time) of the pneumonia are likely to return. So let's all hope and pray that does not happen.
Process
So how does this all work? They expect to start next week with both Mom and Walt.
Walt will undergo one last physical evaluation that includes an EKG and other tests. Assuming nothing unexpected is found (Beth says that's only happened 1 time and it was someone who had literally never been to the dentist in their life), he will start Neupogen doses to boost his stem cells. Then they extract them for transplant.
Mom will begin treatment one day next week where they will give her the chemo, a few days of treatment, and 1-day of radiation. They say the infusion of stem cells (and therefore the actual transplant) would begin that day.
From there, there are a few drugs which I'll list in a later post that she'll take. And they'll do biopsies and tests until they confirm all that is left is male DNA. Beth was funny. She immediately clarified Mom would still look and act like the 'sweet Cathi we all know.' Needless to say everyone treating Mom has been touched by her amazing attitude and strength.
Between now and then
This weekend will be the 'Light the Night' walk for the Leukemia and Lymphoma Society, family time, and overall mental / physical preparation for the weeks ahead. We are extremely happy and proud Mom once again has cleared a hurdle to get to this point. Now let's all root her through the next phase!
I'm also apologizing in advance for anything I may correct later as my notes are at my office and this was all off the top of my head. :)
Saturday, September 6, 2008
I go walking
My clinic visits have dwindled to once a week. They draw blood, I see a "provider" (a doctor or nurse practitioner) and sometimes a chest X-ray or CT scan. No transfusions for over 2 weeks now. No Potassium IV either, thanks to some really, really large pills I take every day (This requires a special kind of powerade Zero to ease them down in halves.)
And this week ............... the white cell count had normalized, neutrophils were normal and I got a bit more freedom. I can eat more freely...salad is a real treat. (washing lettuce with soap and water was a chore that we didn't do often). But I'm really looking forward to the opportunity to taste some Bo-Lings Szechuan green beans. I can go to a restaurant at a time when there aren't many people there. Only 'nice' restaurants...no BackYard Burgers, or McDonald's french fries.
Tonight my sister Janice is fixing us steaks on the grill and mine will not be "cooked through" (a euphemism for well done) Still no wine to go with it, but I don't miss that. yet.
The doctor also said..."get stronger"
"ok" I think and announce that I climbed 2 steps unaided.
He was unimpressed.
He said go to the mall and walk. Take a mask in case you see anything risky, and wash your hands a lot, but get stronger.
So Metcalf South, here we come. Metcalf South was the first enclosed area mall (late 60s) and is now nearly vacant. It's also small compared to newer malls and one must walk many loops to accumulate a mile. However, for me it's perfect. Yesterday we saw an employee open the gate to the Macy's store. She was revealed from the floor up. High heels, dark hose, pencil skirt, silk blouse, then her gray hair and face. She must have been 80 and she was marching around in high heels while I was barely able to circle the upstairs of the mall in sneakers. sigh. I walk til my legs shake which doesn't take long but it sure feels good.
Meanwhile my days are getting more interesting as I see more friends and spend more time with the business. Conor is coming to town for the "Light the Night" walk next weekend and will stay while Mom & Dad travel to Denver for niece, Andrea's wedding.
What happens next? or when? We are waiting still for my lungs to be completely clear of pneumonia or "infiltrates." This past Wednesday, the lungs sounded clear for the first time so hopefully the CT scan will be clear. I expect I will go to the clinic on some Wednesday in the next few weeks and the doctor will say "ok, when can your brother be here? go to the hospital tomorrow." and the transplant process will begin. Because everything happens suddenly in this world.
I am very grateful to all of my friends and family for the emails and cards that just keep coming. Your support is pulling me through. thank you ever so much.
Cathi
And this week ............... the white cell count had normalized, neutrophils were normal and I got a bit more freedom. I can eat more freely...salad is a real treat. (washing lettuce with soap and water was a chore that we didn't do often). But I'm really looking forward to the opportunity to taste some Bo-Lings Szechuan green beans. I can go to a restaurant at a time when there aren't many people there. Only 'nice' restaurants...no BackYard Burgers, or McDonald's french fries.
Tonight my sister Janice is fixing us steaks on the grill and mine will not be "cooked through" (a euphemism for well done) Still no wine to go with it, but I don't miss that. yet.
The doctor also said..."get stronger"
"ok" I think and announce that I climbed 2 steps unaided.
He was unimpressed.
He said go to the mall and walk. Take a mask in case you see anything risky, and wash your hands a lot, but get stronger.
So Metcalf South, here we come. Metcalf South was the first enclosed area mall (late 60s) and is now nearly vacant. It's also small compared to newer malls and one must walk many loops to accumulate a mile. However, for me it's perfect. Yesterday we saw an employee open the gate to the Macy's store. She was revealed from the floor up. High heels, dark hose, pencil skirt, silk blouse, then her gray hair and face. She must have been 80 and she was marching around in high heels while I was barely able to circle the upstairs of the mall in sneakers. sigh. I walk til my legs shake which doesn't take long but it sure feels good.
Meanwhile my days are getting more interesting as I see more friends and spend more time with the business. Conor is coming to town for the "Light the Night" walk next weekend and will stay while Mom & Dad travel to Denver for niece, Andrea's wedding.
What happens next? or when? We are waiting still for my lungs to be completely clear of pneumonia or "infiltrates." This past Wednesday, the lungs sounded clear for the first time so hopefully the CT scan will be clear. I expect I will go to the clinic on some Wednesday in the next few weeks and the doctor will say "ok, when can your brother be here? go to the hospital tomorrow." and the transplant process will begin. Because everything happens suddenly in this world.
I am very grateful to all of my friends and family for the emails and cards that just keep coming. Your support is pulling me through. thank you ever so much.
Cathi
Monday, September 1, 2008
Looking Good
Happy Labor Day everyone,
I'm posting today with a photo I hope. Of me looking okay. Thin and hairless, but good nonetheless.
I saw the pulmonologist on Friday and he was positive but inconclusive. He showed me the CT scans from before I got sick and I could see the progression of the pneumonia as it developed and then as it healed. I am taking antibiotics now, 1 oral and 1 IV. Home health care showed Mom how to deliver the IV antibiotic. Thus saving the daily clinic visits. Mom will be Nurse's Aide qualified when this is over.
So....no long walks. That was my only outing and now sometimes I just want to get out of the house....go for a drive. anything!
Back to the pulmonologist. He says "the scans are about 3 weeks behind how you feel and clearly you are feeling pretty good" So we just need to wait til you finish the antibiotic and some more time passes and check again. It's a time thing. So time.."heals all ills" Isn't that the saying? The pulmonologist and Ganguly will pow-wow and see what the next step is and when the transplant process can begin. They may do another bronchioscopy to see if they can determine exactly what's in there. Information is good.
Today I climbed 2 steps unaided. a major goal. Now I'm after more steps and standing up out of a chair without pushing.
Janice is here this weekend and we've had a couple of challenging games of Scrabble. We've each snuck some questionable words in there. The response from Janice is "she's sick...I should let her win." My response is "her IQ is higher than mine...of course she is right..." The tally now is even for wins.
Subscribe to:
Posts (Atom)
